Evidence for multidimensional resilience in adult patients with transfusion-dependent thalassemias: Is it more common than we think?

Abstract

Life expectancy of patients with transfusion-dependent thalassemias has increased with the development of improved treatment over the last few decades. However, β-thalassemia disorder still has considerable lifetime treatment demands and heightened risk of frequent complications due to transfusion-transmitted infections and iron overload, which may affect thalassemic patients' functioning in different domains. The vast majority of published studies on thalassemic patients have focused on children and adolescent functioning, and little research has examined adults. Hence, the current study was planned to examine the functioning and resilience of adult thalassemic patients in a comprehensive way. We examined multidimensional resilience and functioning across different domains (psychological adjustment, treatment adherence, social functioning and occupational functioning). We also examined demographic and medical variables that may relate to resilience and functioning. Participants were adult patients [n = 38; age M = 31·63, standard deviation (SD) = 7·72; 72% female] with transfusion-dependent thalassemia in treatment in a hospital in the northeastern United States. The results suggest that most adult thalassemic patients tend to be resilient, demonstrating good functioning in four main domains: psychological adjustment, treatment adherence, social functioning and occupational functioning. Despite the considerable demands of their illness, adult thalassemic patients appeared to be adapting well, demonstrating evidence of multidimensional resilience.